Rachel’s Story – Anaemia and IBD

Living with iron deficiency anaemia: Inflammatory bowel disease. “It’s not like normal tiredness - the fatigue is bone-crushing.”


Did you know?

Inflammatory bowel disease (IBD) is a term mainly used to describe two conditions: Ulcerative colitis and Crohn’s disease. They are both long-term conditions that involve inflammation of the gut. Anaemia is a consistent clinical feature of IBD and is very common amongst IBD patients – one third of this patient group suffer from recurrent anaemia. Despite this, iron deficiency anaemia is often overlooked in IBD patients , partially because chronic fatigue – a frequent IBD symptom itself – can also be a common symptom of anaemia.14

How were you diagnosed with iron deficiency anaemia?

I began suffering from mild but persistent rectal bleeding in 2000. I went to visit my GP and was referred to a specialist, who diagnosed me with inflammatory bowel disease (IBD). 18 months after being diagnosed with IBD, my iron levels started to drop, and I was told I was anaemic. Within a further 6 months my iron deficiency anaemia was so severe I was told I needed an urgent blood transfusion.

Over the next few years I had quarterly blood tests and was prescribed iron tablets to maintain my levels, but unfortunately I didn’t tolerate them very well because of my IBD. Thankfully my IBD has been in remission since starting a new therapy in 2010.

I have continued to take iron tablets which has stabilised my iron levels, until recently, when I became anaemic again after suffering from unusually heavy periods. I was diagnosed with adenomyosis, a condition in which the inner lining of the uterus breaks through the muscle wall of the uterus, causing heavy bleeding.

What symptoms do you experience?

I suffered from the classic symptoms that are common amongst iron deficiency anaemia patients, such as fatigue, restless legs, heart palpitations and muscle cramps. But for me, the most noticeable symptom was anxiety and the effect iron deficiency anaemia had on my mood. It was not a state of depression, rather an impending sense of doom that I was unable to explain.

How does it affect you in your daily life?

I don’t have children and so I didn’t have to worry about dependants. I was also very lucky in that even at the stage I was most unwell, I thrived on the routine of the working day and so that pulled me through. Where I was most affected by the iron deficiency anaemia was in my social life. Again, the anxiety was tied into a fear that I would not be able to perform socially, which is a different pressure to being at work.

What could be done to improve diagnosis and treatment of iron deficiency anaemia?
In my experience of suffering with IBD, I always felt that the diagnosis and treatment of iron deficiency anaemia came as an afterthought. If doctors were to treat the iron deficiency anaemia at the same time as the disease, I think you would see improvements in patients’ mood, energy levels and possibly even in the markers of their disease.

Overall, my message to policy makers is that they should try to understand the economic, social and, in particular, the personal impact iron deficiency anaemia has. To the public, and particularly women, I would stress how important it is to be aware of your iron levels, and to understand how they impact on both your physical and mental health.

What do the experts say?

Rachel's story is an all too common description of the debilitating symptoms that are associated with anaemia in gut related diseases. These classic symptoms of anaemia can be described frequently in patients with inflammatory bowel disease and unfortunately they occur most commonly during disease flare ups. Iron deficiency anaemia doesn't just cause problems in patients with IBD though; it can also be found in women with heavy periods, as Rachel describes.

We also see iron deficiency in other diseases of the gut where there may be bleeding, including stomach cancer, bowel cancer and peptic ulcers. The good news is that prompt identification can allow us to focus on treating the iron deficiency and this can be through tablets, syrups or the use of intravenous therapy.

Dr Matthew Brookes, Consultant Gastroenterologist, The Royal Wolverhampton NHS Trust